Danny found a video of a panel of doctors who attended a symposium held by the Carcinoid Foundation. We watched the videos of two doctors who specialize in carcinoid, and the actual panel discussion, and were really enlightened. It seems that the primary carcinoid tumor could be as small as a pin point or as large as a grain of rice. With that being said, the tumor located in my mezentery is apparently NOT my primary tumor as my oncologist has been telling me. (This leads us to wonder exactly how much my oncologist really knows about carcinoid, especially since she asked me if I wanted a general surgeon to operate on my mezentery.)
We were extremely impressed with the two doctors, one of whom practices in New Orleans, and has had much success in locating and removing primary tumors, thus extending the lifespan of the patients. I had an appointment with Dr. Chohan this past Thursday, and I asked her if she had/has other carcinoid patients whose tumor is located in the mezentery. She assured me she does/has, and I asked her where she sends those patients. She told me New Orleans (to the clinic where the video doctor practices). She was quite ready to get the ball rolling to refer me to the New Orleans clinic and get me scheduled for mid-June. I put her off because I have to check with my insurance about coverage, and because I have an appointment with an oncologist from the Integrist Cancer Institute this Friday afternoon. However, after having watched the videos, Danny and I are convinced that New Orleans is the way to go. It will take a lot to convince me otherwise.
I am feeling really good these days, except for tummy and back issues, but I am able to work all day and have enough energy to do things around the house. I am so very thankful for that! A month ago, I didn't know if I'd ever have the energy to function normally again.
I am very grateful for all the prayers, thoughts and cards throughout this journey. They lift me up more than I could have ever imagined!
Sunday, April 25, 2010
Sunday, April 18, 2010
April Showers Bring May Flowers
I'm probably the only person on earth who is loving all the gentle rain we've had since Friday! It's refreshing and relaxing and cleansing.
Friday, April 16 was my four-month milestone. It also marked one week back at school, half-days. That went well, and I have gained strength everyday, so I'm shooting for all day this week. I am hopeful that I can make it. It's just as tiring to work half-days and have to get things ready for the last two classes as it is to stay all day, I think.
Today I'm doing a 24-hour urine collection to check for carcinoid markers. Hopefully, the count has gone down since the two chemo emobilization treatments. My next step is to have my tumor debulked (reduced) and I'm still in search of a surgeon. I contacted the Integris Cancer Institute this past week and if the person I spoke with communicated with her co-workers correctly, I am a candidate for their organization. Of course, the person who schedules appointments was not available, so I'll call back Monday morning. I'm not going to get my hopes up, but if in fact they do treat carcinoid patients, perhaps they have a surgeon who has operated on a mezentery before. Danny read online that a debulking surgery can take as long as 12 hours and it's followed by chemo (yuck!). Needless to say, I want someone who knows what he/she is doing if I'm going to be in surgery for up to 12 hours!
On a side note, I've battled with trying to grow a clematis for the past four or five years. Danny sprayed my first plant (which didn't do too well its first year) with Round-up, and the replacement was slow to take off. Last year it had one blossom before the sun took its toll. This past week I strolled through my backyard, and lo and behold -- the clematis had grown to the top of its trellis and was loaded with buds!! I checked it today and it has five or six blossoms!! I'm taking it as a sign from God, and am very thankful.
Friday, April 16 was my four-month milestone. It also marked one week back at school, half-days. That went well, and I have gained strength everyday, so I'm shooting for all day this week. I am hopeful that I can make it. It's just as tiring to work half-days and have to get things ready for the last two classes as it is to stay all day, I think.
Today I'm doing a 24-hour urine collection to check for carcinoid markers. Hopefully, the count has gone down since the two chemo emobilization treatments. My next step is to have my tumor debulked (reduced) and I'm still in search of a surgeon. I contacted the Integris Cancer Institute this past week and if the person I spoke with communicated with her co-workers correctly, I am a candidate for their organization. Of course, the person who schedules appointments was not available, so I'll call back Monday morning. I'm not going to get my hopes up, but if in fact they do treat carcinoid patients, perhaps they have a surgeon who has operated on a mezentery before. Danny read online that a debulking surgery can take as long as 12 hours and it's followed by chemo (yuck!). Needless to say, I want someone who knows what he/she is doing if I'm going to be in surgery for up to 12 hours!
On a side note, I've battled with trying to grow a clematis for the past four or five years. Danny sprayed my first plant (which didn't do too well its first year) with Round-up, and the replacement was slow to take off. Last year it had one blossom before the sun took its toll. This past week I strolled through my backyard, and lo and behold -- the clematis had grown to the top of its trellis and was loaded with buds!! I checked it today and it has five or six blossoms!! I'm taking it as a sign from God, and am very thankful.
Tuesday, April 6, 2010
Spring is in the Air
I feel I have missed so much this year during my recovery process, but I count my blessings that I had so many sick days accumulated. I have had the luxury of recovering without having to worry about my job, but it has still been frustrating. Neither my doctor nor the radiologist gave me any indication that I would feel like I had run into a brick wall, yet after the fact, all symptoms and ailments were "just part of it" and to be expected.
For so many weeks I had trouble making it through a quick shower. I would nearly pass out and have to lie down as soon as I got out. Make-up and hair were not done unless I had to go to an appointment, and then I had to push myself to get through those two tasks. Friday night date night (Alfredo's) has been a big effort, but it always made me feel good to go through the grooming process and go out in public.
Easter is "my" holiday to cook, but since I have trouble preparing a batch of biscuits without having to sit down twice during the process, I decided to forego hosting this year, so Rick and Tracey did the honors. I had been doing pretty well, gaining strength and feeling good, then had a setback on Friday night. After our date night, I went home feeling queasy. Before bed, I threw up, but it wasn't a food poisoning reaction...I threw up once and felt better. Saturday, however, I couldn't get out of bed. Sunday, it took every fiber in my being to get ready and make it to Easter dinner. Feeling hot and clammy, I made it through dinner and after a nap, was ready for dinner number two at Mom and Dad's.
My plan was to go back to school on Monday, but I decided to wait until Thursday. Two weeks ago, I acquired a pain in my right shoulder, which prompted a CT scan. The scan showed nothing out of the ordinary...I have a dying tumor near my diaphragm (I'm feeling it)...but the pain in my abdomen and shoulder are uncomfortable when I cough, sneeze, or breathe deeply. I have to take pain pills or Tylenol to keep the pain in check, and even so, there's only one comfortable sleeping position...on my back...and that gets old pretty quickly. The enzymes in my liver are elevated due to the dying tumors, so I have bile rubin which is not being processed (no adverse side effects).
My challenge now is to find a surgeon to do the debulking procedure on my mezentery. I am at a total loss on how to do this. I prefer a surgeon who has performed such a surgery before, but have no idea how to locate one. Dr. Chohan asked if I was OK with the surgeon whom I met on December 16 when this all came about, but I just don't feel she is the person for the task. My next doctor's appointment is April 21, at which time debulking will be discussed.
For so many weeks I had trouble making it through a quick shower. I would nearly pass out and have to lie down as soon as I got out. Make-up and hair were not done unless I had to go to an appointment, and then I had to push myself to get through those two tasks. Friday night date night (Alfredo's) has been a big effort, but it always made me feel good to go through the grooming process and go out in public.
Easter is "my" holiday to cook, but since I have trouble preparing a batch of biscuits without having to sit down twice during the process, I decided to forego hosting this year, so Rick and Tracey did the honors. I had been doing pretty well, gaining strength and feeling good, then had a setback on Friday night. After our date night, I went home feeling queasy. Before bed, I threw up, but it wasn't a food poisoning reaction...I threw up once and felt better. Saturday, however, I couldn't get out of bed. Sunday, it took every fiber in my being to get ready and make it to Easter dinner. Feeling hot and clammy, I made it through dinner and after a nap, was ready for dinner number two at Mom and Dad's.
My plan was to go back to school on Monday, but I decided to wait until Thursday. Two weeks ago, I acquired a pain in my right shoulder, which prompted a CT scan. The scan showed nothing out of the ordinary...I have a dying tumor near my diaphragm (I'm feeling it)...but the pain in my abdomen and shoulder are uncomfortable when I cough, sneeze, or breathe deeply. I have to take pain pills or Tylenol to keep the pain in check, and even so, there's only one comfortable sleeping position...on my back...and that gets old pretty quickly. The enzymes in my liver are elevated due to the dying tumors, so I have bile rubin which is not being processed (no adverse side effects).
My challenge now is to find a surgeon to do the debulking procedure on my mezentery. I am at a total loss on how to do this. I prefer a surgeon who has performed such a surgery before, but have no idea how to locate one. Dr. Chohan asked if I was OK with the surgeon whom I met on December 16 when this all came about, but I just don't feel she is the person for the task. My next doctor's appointment is April 21, at which time debulking will be discussed.
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